Hold Tight and Pretend It's a Plan

Not to get too carried away with a metaphor, but we are certainly heading in a forward direction now and there have been no unexpected detours or stops in recent weeks. Even Jon himself says he is getting better. His blood counts continue to improve (we are just a few numbers away from the platelet count that lets him take a blood thinner), his energy is slowly improving, and he is cooking just about all of our dinners now. Hallelujah! And he hasn't really even noticed that he is not getting any treatments at all for cancer, as there is no measurable cancer at the moment. There are some unsolved or undiagnosed ailments but they have been acknowledged by the Kaiser doctors and he has more appointments to try to figure out the cause of the pain in his arms and shoulders and back. So many scans. Even though we don't look back too much, I think the last year was one of the hardest and worst years of Jon's cancer experience, and now it feels like the CAR-T worked. He is still th...

The good news continues to accumulate, even though the pace of improvement is ever-so-slow and meandering. Recent bloodwork shows that there is NO measurable myeloma in Jon's blood.  He is balancing his various domestic responsibilities with naps. Cooking is real again. He is continuing to off-load his complicated contracting job, with daily Zoom calls with a very patient programmer who is trying hard to understand how Jon's brain works. The granddaughters are a steady and uplifting presence. Jon is now up to carrying Thalia around because she still prefers to be up and mobile, not left by herself on the floor. She weighs about 15 pounds and never stops wiggling, so carrying her is work. The older two always make Jon feel loved, running in for a hug. He went out to Loudoun today, protesting that his schedule is way too busy now. He went to meet a potential new mechanic. Our mechanic of many years retired, alas, and we need to figure out how to keep everything working. When Jon ...

Most of Jon's physical ailments are now mostly unrelated to his cancer, although I am sure they are all partly caused by the last 17 years of treatments and coping. The thing that is worrying me the most right now is the cough that will not go away. He thinks it is all about his sinuses draining, and maybe it is, but coughing is such a disruptive and tiring thing, night and day. The various medicines he has tried to combat the drainage have not been effective. He has an appointment with his PCP this week and he will he go through the list of things that are still not so great. As I have said so many times before, all the varieties of pain and discomfort are taking a toll on his mood. However, we also see that he is able to do more every week. He is shopping more, fixing things more, working for Al a little bit more, cooking more, and watching no more TikTok (he decided to go cold turkey).  If he doesn't want to do something (like go to a third seder in a row), he doesn't go...

Now that we are reminded that it takes about three months to stabilize the bone marrow function and start to feel more normal, we can wait a little longer. We know that nothing really happens on a schedule, but a friend of ours who has the same cancer and had the same treatment told us that she experienced a bone marrow malfunction (so to speak) at about Week 8 and she stopped having any neutrophils at all. It took a while to get everything working. This week's blood report was uplifting -- his red blood cells have gone up a bit, his platelets have gone up higher than they have been in months (still really low, but it's the trend that matters) and those shots must have juiced up his neutrophil production because he is practically in the normal range by now. I would say he has been looking a little less limp in the last few days. And it is quite possible that gaining weight is a very long term project. He just needs to eat and not think about weight, I guess.  It is like waiting...

Jon showed Benjamin how to grease the spader -- a long process because there are so many grease fittings and mysterious places to fill with gear oil. It took a couple of hours, including repairing the power washer first. So off I went on my nicely greased spader. The timing was important because there was rain predicted this afternoon and I had just spread fertilizer on the fields yesterday. We have to get the fertilizer turned under before the rain or it will wash away -- not good for the waterways or the soil. After three successful passes, I looked behind me and saw that something was wrong. The spader was askew, not attached at one point. I have seen this before. Not often, but when it happens, it takes some muscles and some brains to get things lined up again because a spader is a big, heavy piece of equipment. You can't just lift it up and push it back into alignment. I looked at it carefully to be sure I could describe it correctly and I walked away. I knew that this might b...

There is nothing new to report. Jon is feeling some discouragement about all the things: a lack of energy, feeling cold all the time even though the rest of us are warm, a back that feels worse than it ever has even though there are no indications of anything bad on any scans, and this damn cough that never goes away. Sleep is elusive. His blood counts took a dive this week, which may explain some amount of the fatigue (on the brink of getting a call to come in and get some more red blood cells). All the numbers are down. If his neutrophils were this low when we were still at Hopkins, they would not have let him go. All this means that he is still immunocompromised, as much as ever. His platelets even went down. He isn't  allowed to shave anymore because he might bleed too much. He doesn't love shaving anyway. Now he is giving himself shots to stimulate his bone marrow to make some more neutrophils. Alissa is here for a week and she has some thoughts on medications that might b...